https://doi.org/10.1177/1359105317719581 Journal of Health Psychology 2020, Vol. 25(4) 522 –537 © The Author(s) 2017 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1359105317719581 journals.sagepub.com/home/hpq
Introduction
Rehabilitation practices are aimed at reducing activity limitations experienced by people with disabilities (World Health Organization (WHO), 2002). Historically, rehabilitation is rooted in the medical model, which views disability as “a feature of the person” that “calls for medical or other treatment or intervention, to ‘correct’ the problem with the individual” (WHO, 2002: 8). Based on normalizing liberalist and individual-ist conceptions (Davis, 2006a; Stiker, 1999 [1997]), modern rehabilitation has been aimed at correcting bodily or mental differences for the sake of integrating people with disabilities within the larger society. However, equality of rights for persons with disabilities has been based under this approach on the transparent
standard of the non-disabled body, appearance, and function (Stiker, 1999 [1997]). Alongside its invaluable contributions to the well-being of people with disabilities, rehabilitation, both as a professional field and as a socio-cultural world-view, has been criticized for locating the “prob-lem” within persons with impairments rather than in the social structures that disable them (Charlton, 1998; Oliver, 1990). Alternative
Late emotional effects of
rehabilitation during childhood
and their impact on coping with
deafness in adulthood
Adva Eichengreen and Dan Hoofien
Abstract
This study examined potential influences of childhood rehabilitation and over-normalization on coping with disability in adulthood. A total of 88 deaf and hard-of-hearing students were interviewed retrospectively about their childhood and completed self-report questionnaires assessing psychological environment-directedness and present emotional and behavioral coping with deafness. It was partially supported that over-normative parental attitude negatively affected coping with deafness through the mediation of elevated environment-directedness. Intensity of childhood rehabilitation was not found to affect adulthood coping with deafness. However, post-hoc analyses supported this mediation path when rehabilitation had been intensive yet not prolonged. Alleviating changes in the perception and practice of rehabilitation are suggested.
Keywords
deaf, disability acceptance, false-self, hard-of-hearing, normalization, psychodynamic theory, rehabilitation
The Hebrew University of Jerusalem, Israel
Corresponding author:
Adva Eichengreen, Department of Psychology, The Hebrew University of Jerusalem, Mount Scopus, Jerusalem 9190501, Israel.
social and cultural perspectives have been sug-gested, part of whom were adopted within the International Classification of Functioning, Disability and Health (ICF) biopsychosocial definition of disability (WHO, 2002) and are increasingly adopted by rehabilitation scholars and stakeholders (Gibson, 2009).
Psycho-emotional effects of
rehabilitation and normalization of
children with disabilities
Comparing to the extensive study of rehabilita-tion and normalizarehabilita-tion from sociological, his-torical, and philosophical perspectives, little was it examined from critical psychosocial points of view, especially in the context of chil-dren with disabilities. Stiker (1999 [1997]) pointed at the “double constraint” that weighs on rehabilitated people, who on the one hand may internalize an essential sense of impaired and deviant identity and on the other hand are expected to behave “as if nothing were wrong” (p. 152). The social pressure to pass as non-disabled may come at emotional costs of self-hatred or self-denial (French, 1993; Linton, 1998; Samuels, 2003). Such emotional effects can be considered as a form of psycho-emo-tional disablism, a concept which refers to psy-chological restrictions on the well-being of people with disabilities, such as shame or low self-esteem, which are created by social and relational barriers (Reeve, 2004; Simpson and Thomas, 2015; Thomas, 1999). Few studies, however, have directly addressed the subjec-tive experiences of children with disabilities (Watson, 2012). Applying qualitative analyses, Connors and Stalker (2007) found that children with physical, sensory, or learning disabilities tended to emphasize in their self-presentation their similarity to non-disabled peers. Many of these children lived in educational and familial environments that did not encourage talking about the disability. The researchers suggested that they lacked a positive language to think and talk about disability-related experiences (Connors and Stalker, 2007). Environments which neglect or deny self-experiences that
relate to disability are not uncommon, espe-cially when the disability is partial or non-visi-ble, such as with children who are partially sighted (French, 1993) or hard-of-hearing (Meadow-Orlans et al., 2003). More specific to rehabilitation efforts, directing one’s energy to a continued self-correction may at times over-burden children and their families (Gibson et al., 2009). Intensive rehabilitation, such as physical or speech therapy, under certain cir-cumstances, may impair other aspects impor-tant for one’s quality of life, such as autonomy in decision-making and self-determination, positive self-perception, satisfactory social relations (Giangreco, 1996; Oliver, 1990), or in the case of children with disabilities “time to just be kids” (Gibson, 2012). Several studies conducted with children with physical disabili-ties, such as cerebral palsy (see review at Gibson et al., 2009), found that subjective well-being or life satisfaction did not corre-spond directly to functioning level. These stud-ies question traditional assumptions of pediatric rehabilitation and highlight more generally the need to further study the implications of reha-bilitation for children, with special focus on the viewpoint of the children themselves (Gibson et al., 2009).
The relations between intensive
rehabilitation and normalization and
elevated environment-directedness—the
case of deaf and hard-of-hearing children
In a previous study (Eichengreen et al., 2016) on which this study is based, we hypothesized cer-tain psychodynamic long-term effects of rehabili-tation and integration processes on 88 deaf and hard-of-hearing (d/hh) young adults.1 These
sense of self. According to Winnicott’s theory, the infant’s sense of self, or mental existence, devel-ops in a complete dependency on the adaptation of the parental environment to the infant’s needs. In case of accumulated failures in parental adap-tations, an existential anxiety arises in the child, to which he/she responds by adjusting to the car-egiver’s needs and expectations, at the expense of being aware and express his/her own psychologi-cal states (Winnicott, 1965a [1960]). From infancy onward, environmental adaptations are crucial for the formation of a firm, alive, and authentic sense of self in lessening degrees and are still important well into adolescence (e.g. Khan, 1974; Winnicott, 2005a [1971]). As a uni-versal defense mechanism, the False Self is described in the clinical literature as ranging on a continuum from healthy to pathological, where in its rigid state the person complies compulsively with internalized expectations of other people or may feel inner emptiness, detachment, and inau-thenticity (Khan, 1974; Winnicott, 1965a [1960], 1965b [1960]). When tested empirically, various False Self measures were found to correlate sig-nificantly with negative affects, depressive symp-toms, anxiety, loneliness, and low self-esteem (Eichengreen and Hoofien, 2017; Harter, 1997; Weir and Jose, 2010).
The False Self is usually described in the clini-cal literature as resulting from particular aspects of parent–child relationship. However, such pro-cess may also be relevant to children with disabili-ties who need to adapt themselves to environmental expectations in the process of “overcoming” the disability. We found that an intensive rehabilitat-ing and normalizrehabilitat-ing environment in childhood may generate what we termed as compliant false-self, or high environment-directedness, in adult-hood. High environment-directedness implies an emotional dependency on other people’s valida-tion as a preliminary condivalida-tion to self-acceptance and self-expression, preoccupation with the way one is perceived by others, and a tendency to com-ply with expectations and demands of other peo-ple in order to quiet inner fear or insecurity (Eichengreen et al., 2016). Two risk factors were found in that study to be positively associated with high environment-directedness at adulthood. The
first was intensive rehabilitation in childhood, which included speech and hearing training that started at a young age, lasted for several years, and involved frequent work of the child with both pro-fessionals and with parents at home. The second variable was parental “over-normative” attitude. These were parents whose wish to see their child as completely “normal” was accompanied by lack of awareness or empathic acknowledgement of deafness-related needs or difficulties experienced by the child. For example, parents who could not understand why the child had social difficulties (related to the hearing loss) and thought he/she should manage “just like everyone else.” The results of that study demonstrated how intensive auditory and speech therapy or parental demand of the child to adapt himself/herself to hearing norms and standards, alongside their advantages, may at the same time weaken the child’s sense of self and impair the ability in adulthood for inde-pendent self-approval and self-soothing. The pos-sible influence of the cultural context was also supported in that study at an intergroup level, as the d/hh group presented higher environment-directedness when compared to hearing students who were matched to them according to socio-demographic variables such as gender, age, edu-cational level, and socio-economic background (Eichengreen et al., 2016). In this study we further explore the potential effects of this psychody-namic process on the ability to positively accept and cope with deafness.
The effect of rehabilitation and
normalization processes on coping
with hearing loss
educational, and vocational participation (Erdman, 2006). However, sometimes in con-trast to rehabilitation of adults, children’s rehabilitation, such as physiotherapy or speech therapy, is more attenuated toward functional normalization than to the child’s psychological experience (Giangreco, 1996). When the child is integrated in regular social and educational settings, especially in the case of the non-visible hearing loss, many parents as well as the children themselves pre-fer to think they “got over” the disability (Harvey, 2003). In the case of d/hh children, in spite of significant medical and technologi-cal advances including cochlear implanta-tions, children still face some degree of hearing difficulties, especially in circum-stances of background noise or group discus-sions (Bat-Chava and Deignan, 2001; Wheeler et al., 2007). Their educational mainstreaming does not guarantee psychological adjustment to hearing loss and hence better socio-emo-tional well-being. For example, in a qualita-tive study conducted with seven d/hh adolescents, the interviewees recalled feeling ashamed of the hearing difficulties and refraining from sharing them with hearing peers (Israelite et al., 2002). Experiences such as hiding one’s hearing aids or even avoid using them were reported by mainstreamed d/ hh adolescents in other qualitative studies as well (Kent and Smith, 2006; Punch and Hyde, 2005). Accepting the deafness is particularly challenging for these children in light of the social difficulties that many d/hh children experience due to communication barriers and stigma (Israelite et al., 2002; Most, 2007; Punch and Hyde, 2005; Zaidman-Zait and Dotan, 2017). Having been separated from the company of other d/hh peers, they may feel lonely and isolated, especially in group inter-actions during adolescence. This may nega-tively affect their social self-concept and even limit their career decision-making. Using self-report questionnaires with 68 deaf adoles-cents, Van Gent et al. (2012) found that, comparing to norms of hearing peers at the same educational level, deaf adolescents who
were mainstreamed in regular schools felt they had lower social acceptance and social competence. In interviews conducted with 12 mainstreamed d/hh adolescents, Punch and Hyde (2005) found that low social self-esteem was leading their participants to doubt their ability to succeed in the job market and even limited their choices in the process of career decision-making. Such processes may deeply influence their well-being in adulthood. Fellinger et al. (2007) compared various aspects of quality of life and mental health between 373 hard-of-hearing adults, 232 sign-ing-deaf, and norms of the hearing population adjusted by age and gender. It was found that hard-of-hearing people reported on higher levels of mental distress comparing to hearing people and were more socially isolated com-paring to both the hearing and the signing-Deaf communities2 (Fellinger et al., 2007).
Introducing environment-directedness
as a mediating factor between
rehabilitation in childhood and coping
with deafness in adulthood
processes may negatively impact one’s attitude toward disability through the mediation of ele-vated environment-directedness. Testing this on the d/hh sample described in Eichengreen et al. (2016), we suggest an indirect mediation path between childhood risk factors for environment-directedness—intensive rehabilitation program and over-normative parental attitude—and diffi-culty in adulthood in accepting and revealing the hearing loss in interpersonal communications.
In particular, we hypothesize that intensive auditory and speech services during childhood, conducted with both professionals and parents (parents are often instructed to do auditory and speech exercises with the child at home on a daily basis and to correct the child’s speech during daily conversations), may create a demanding environmental atmosphere which encourages in the child an elevated self-adapta-tion to the environment, such as elevated sensi-tivity to other people’s judgment, expectations, or approval. This in turn may hinder the ability (tested in adulthood) to positively accept parts of the self that do not correspond to “hearing” norms. This is reflected by the degree of emo-tional acceptance of the hearing loss (e.g. feel-ing open and not ashamed about it), as well as the behavioral ability to manage the deafness adaptively in conversations instead of, for instance, hiding it by pretending to understand. The same mediation path was hypothesized for parental over-normative attitude as an inde-pendent variable. Parents who tend to ignore aspects of the child’s coping with hearing loss, out of their wish to see the child as completely “normal,” may transmit to the child a message that he/she should adapt themselves to other people’s expectations before attending to their own needs and feelings. Figure 1 summarizes the hypothesized mediation model of the study.
Method
Participants
Participants were 88 d/hh students from vari-ous Israeli higher education institutes. Table 1 displays their background characteristics. All
the participants had hearing loss since birth or the first 3 years of life. All of them were individually integrated in hearing classes Figure 1. Summary of the mediation model
hypothesized between childhood risk factors and adulthood coping with deafness.
*Environment-directedness was assessed by two mea-sures: Environment-Directedness Scale and Brief Fear of Negative Evaluation Scale. Each mediation path was com-puted for each of these measures separately, summing up in eight mediation paths in total.
Table 1. Background characteristics of the
participants (n = 88).
M SD Range
Age 24.13 2.50 18–30
Education (years) 14.63 1.70 12–20
Siblings 2.59 1.72 0–10
Parents’ educational statusa 3.51 1.29 1–6
Socio-economic statusb 4.49 .79 2–7 n % Gender Female 50 56.8 Male 38 43.2 Religious No 72 81.8 Yes 16 18.2
Involved in prolonged relationship
No 46 52.3
Yes 42 47.7
Parents living together
No 18 20.5
Yes 70 79.5
SD: standard deviation.
aAverage of both parents. The educational status ranges
from 1 (less then 12 years) to 6 (third degree or beyond).
bAverage of childhood and present. The socio-economic
throughout their school years, where they were the only d/hh child in the class. Among them, 85 percent used spoken language only, whereas the rest knew sign language but still used spoken language as their main mode of communication. The degrees of hearing loss varied from mild hearing loss or unilateral deafness (22%) to moderate or moderately severe (28%) or severe to profound hearing loss (50%). Eight participants (9%) had addi-tional disabilities (ear/face deformation, limp, ADD (Attention Deficit Disorder) or anosmia). Eight of the participants were born in former USSR countries, two were born in the United States, and one was born in Lebanon. They all immigrated to Israel dur-ing their childhood. A total of 23 participants (26%) had siblings or parents with hearing loss.
Procedure
Invitations to participate in the study were sent to suitable participants via the National Insurance Institute of Israel (NIII). In collabora-tion with the research and rehabilitacollabora-tion depart-ments of NIII, invitation letters were sent to all d/hh students who received services from the NIII. The invitation letters were provided with contact details of one of the researchers and at no stage were the researchers exposed to the recipients’ names or addresses. The research was also advertised by organizations for and of people with hearing loss, classified advertise-ments, hearing institutes, and universities’ web-sites and accessibility coordinators. Students who voluntarily made a contact with the researcher were asked about information required for the participation criteria. An inter-viewer subsequently made a private appoint-ment with each suitable participant. The interviewees read and signed an informed con-sent form, filled a packet of questionnaires, and afterward were interviewed for about 1 hour. At the end of the meeting, each participant received a payment equivalent to 25 US$. The research was approved by the ethics committee of the Hebrew University.
Measures
Childhood risk factors
Intensity of the auditory–verbal rehabilitation program. The intensity of rehabilitation during childhood was assessed by seven open ques-tions to which the respondents were asked to give written answers. The questions focused on factual data about childhood speech and hearing training (e.g. “Who did the training with you?” “Were family members involved?” “How often did you practice?”). The answers were coded according to four categories: the age when the rehabilitation started (scoring ranged from 1 to 3, with younger age receiving higher score), the duration of the training in years (scoring ranged from 1 to 4, longer duration was given higher score), the extent to which parents were involved in addition to professionals (scoring ranged from 1 to 4, with a higher score given when family members were involved in addi-tion to professionals), and the weekly frequency of the exercises (scored 1 if frequency was less than two times a week, scored 2 if frequency was two times a week or more). The total sum of scores ranged between 4 and 13. A score of zero was given in case if the respondent had not participated in any significant auditory and speech program. A score of 13 points signified the highest level of intensity of the rehabilita-tion program.
child’s needs related to deafness. (4) Over-normative attitude—parents who denied the deafness or its related needs or had difficulties in empathic understanding of its related expe-riences. Examples for over-normative attitude ranged from parents who refrained from fitting the child hearing aids (in cases of mild hearing loss) to “old immigrants” parents who chose on a regular basis to speak their native language at the dinner table although they could speak Hebrew, despite the fact that the child couldn’t participate in the familial conversations due to having difficulty in hearing languages other than Hebrew; or parents who were not under-standing or emphatic to the child’s social dif-ficulties at school. The measure of parental over-normative attitude was assessed during an in-depth interview about personal, social, and familial aspects of coping with deafness. The protocols of the interviews’ questions and cate-gories of analysis were devised in a preliminary pilot study (Eichengreen, 2014) that was carried out with 12 interviewees who were not part of this study’s sample. All the interviews in this study were transcribed and quantitatively ana-lyzed by the first author and two more trained judges. All the judges expertized in the fields of clinical and rehabilitational psychology or special education and were well acknowledged with the deaf and hard-of-hearing population. The first author and one more judge coded all the interviews (N = 88). The third judge coded the cases in which there was a disagreement (N = 39). The judges were blind to each other’s coding in order to allow for an independent pro-cess. In cases of disagreement, the score cho-sen by the majority of the judges (two out of three) was selected. If there was a disagreement between all three judges, the most moderate coding was selected. Interrater reliability was computed with intraclass correlation coefficient (ICC). ICC for two judges (N = 88) was .544 (p = .000; 95% confidence interval (CI) = .378, .676). For three judges, (N = 39) ICC was .428 (p = .000; 95% CI = .233, .616), which is defined as fair (Cicchetti, 1994). Since more than half of the participants shared the same score of 3 (parents who saw their child as “normal” and
at the same time acknowledged and attended his/her deafness), this variable was recoded as a dummy variable according to the median score: 0 (none over-normative; formerly scores 1–3) and 1 (over-normative; formerly scores 3.5–4). Environment-directedness measures
Environment-Directedness Scale. This 14-item inventory assesses sensitivity to the way other people mirror or judge one’s feelings (“Some-times I take hints from those around me in order to know what I am supposed to think and feel”), need of other people’s acceptance and approval in order to express feelings and thoughts (“I sometimes suppress my feelings when I’m afraid that others will not approve of them”), and tendency to comply with other people’s expectations (“Sometimes I feel that I automati-cally adapt myself to what other people expect of me”) (Eichengreen and Hoofien, 2017). The respondents are asked to rank each item on a 5-point Likert scale. A high score indicates high environment-directedness.
(−.25), and positive affects (−36) (Eichengreen and Hoofien, 2017).
Brief Fear of Negative Evaluation Scale. This 8-item 5-point Likert scale version of the Brief Fear of Negative Evaluation Scale (BFNE) was utilized in this study as a second measure of environment-directedness (Leary, 1983). The fear to be negatively evaluated by others, meas-ured by this scale (“I am frequently afraid of other people noticing my shortcomings”), is an aspect of the emotional dependency on others’ approval which characterizes environment-directedness. The BFNE is a widely used ques-tionnaire and was found to relate inter-alia to measures of social anxiety, self-judgment, and depression (Leary, 1983; Weeks at al., 2008).
The scale was translated into Hebrew in a procedure of translation and back-translation and later on passed to two distinct samples of more than 200 university students each for psy-chometric evaluation (for further details see Eichengreen, 2014). Cronbach’s alpha of the Hebrew version is very high, .94, and similar to the reliability of the original scale, .95 (Weeks et al., 2008). Pearson’s correlations indicate that BFNE relates to other self- and environment-directedness measures at the expected direc-tions: self-relatedness (−.46), self-determination (−.45), and environment-directedness (.80). The scale also correlates with measures of well-being: negative affects (.43), loneliness (.51), satisfaction with life (−.35), and positive affects (−.38) (Eichengreen, 2014).
Measures of emotional and behavioral attitudes toward the hearing loss. The following scales were taken from the Communication Profile for the Hearing Impaired (CPHI; Demorest and Erdman, 1987). The CPHI is a well-estab-lished rehabilitation measure that consists of 25 scales. It estimates a wide variety of factors affecting the communication quality of people with hearing loss for the purpose of improv-ing the rehabilitation process (Demorest and Erdman, 1987). The scales have been utilized extensively in clinical and in research settings (Erdman, 2006). They have been used
interna-tionally and have been translated into several languages (Mokkink et al., 2009). The follow-ing scales were translated into Hebrew in a pro-cedure of translation and back-translation and later on passed to a sample of 219 d/hh respond-ents for psychometric evaluation and validation (Eichengreen, 2014).
Emotional Acceptance Scale. This 9-item 5-point Likert scale assesses difficulties in admitting or revealing the hearing loss as well as negative feelings that individuals direct toward themselves in relation to hearing/communica-tion difficulties (“I find it difficult to tell others that I have a hearing problem,” “I feel stupid when I have to ask someone to repeat what they’ve said”). The scale is inverted so that a high score indicates positive emotional accept-ance. The scale combines items taken from Self Acceptance and Acceptance of Loss scales from the CPHI, two scales that are highly corre-lated (Erdman, 2006). The scales predict adher-ence to the rehabilitation program and positive treatment outcome (Erdman, 2006). Cronbach’s α of the Emotional Acceptance Hebrew version is high, .85 (Eichengreen, 2014), and similar to the reliability range of the original scales in various studies, .84–.90 (Mokkink et al., 2009).
Statistical analyses
Mediation paths were tested using a bootsrap-ping method, which generates an empirical rep-resentation of the sampling distribution of the indirect effect, yielding a CI for the mediation path coefficient. Bootsrapping is recommended due to it being robust to violations of the nor-mality assumption (Hayes, 2009). We used k = 10,000 bootstrap samples for 95 percent CIs. In order to strengthen the validity assessment of the results, each mediation analysis was repli-cated separately for two measures of environ-ment-directedness and for two measures of the attitude toward the disability.
Results
Descriptives
Scales’ reliabilities, descriptive statistics, and intercorrelations are displayed in Table 2. All scales presented good to very high internal reli-ability (Cronbach’s α = .81–.93). The correlation between EDS and Brief Fear of Negative Evaluation (BFNE) scale was high (r = .66), which supports their comprehension as measur-ing a common construct—environment-direct-edness/compliant false-self. The correlation between the Maladaptive Behaviors scale and the Emotional Acceptance scale was high as well (r = .60), indicating that they belong to a
common variable assessing similar aspects of coping with disability (maladaptive behaviors correlating with low emotional acceptance). The intercorrelations between measures of environ-ment-directedness and coping with disability were all significant, ranging from medium to large (r = −.39 to –.54). These findings support our assumption about the associations between one’s attitude toward disability-related parts of the self and one’s attitude toward the self in gen-eral. Furthermore, the findings support the hypothesized negative correlation between emotional and behavioral acceptance of disabil-ity and environment-directedness.
Mediation analyses
The results concerning over-normative parental attitude, summarized in Table 3, were partially confirmed. EDS was found to significantly mediate, in the expected directions, between over-normative attitude of parents and negative emotional attitude toward the disability, as well as maladaptive behavioral coping. The indirect effect was full or partial, respectively. The indi-rect mediation paths with BFNE failed to reach a significant level.
The hypothesis regarding intensive rehabili-tation was not supported since none of the mediation paths were significant. In an attempt to further understand these findings, we con-ducted post-hoc analyses based on splitting the participants according to the median score of the intensity of rehabilitation. The findings of the explorative analyses are described at the fol-lowing section.
Post-hoc analyses
In order to expand our understanding of the rejection of the hypothesis regarding the inten-sity of rehabilitation, we conducted several tests which suggested a possible non-monotone rela-tion between intensity of rehabilitarela-tion and envi-ronment-directedness. When divided according to the median score of the intensity of rehabilita-tion, most of the samples (n = 64) displayed posi-tive spearman correlations between intensity of Table 2. Scale reliability (Cronbach’s α),
descriptive statistics, and scale intercorrelations.a
Variable α M SD 1 2 3 4
1. EDS .92 2.63 .81 – .66 −.54 −.39 2. BFNE .93 2.73 1.03 .66 – −.46 −.52 3. Behaviors .81 3.90 .68 −.54 −.46 – .60 4. Emotional .88 3.57 .89 −.39 −.52 .60 –
SD: standard deviation; EDS: Environment-Directedness Scale; BFNE: Brief Fear of Negative Evaluation Scale. Behaviors: Maladaptive Behaviors Scale (high score = no maladaptive behaviors); Emotional: Emotional Acceptance Scale (high score = acceptance).
a According to the scales’ distributions, Pearson’s r is
rehabilitation and EDS (r = .29, p < .05) or BFNE (r = .32, p < .01). In contrast, the group at the highest level (n = 24, mean score of intensity of rehabilitation = 11.3, standard deviation (SD) = .9 comparing to M = 4, SD = 3.5 for the rest of the sample) displayed a non-significant correlation (r = −.13 for BFNE) or even a significant nega-tive one (r = −.43, p < .05 for EDS) thus “turning over” the positive direction of the association between intensity of rehabilitation and environ-ment-directedness measures. The parameter of intensity of rehabilitation score is computed as a combination of four sub-components: starting age, frequency, the extent of parental involve-ment, and duration of the program in years (see measures section for further details). Mann– Whitney U tests demonstrated that it is the last component which distinguished the highest level group. When compared to other participants who have participated in rehabilitation programs, the highest level group was distinguished not by the intensity of the rehabilitation program during childhood but by its duration well beyond the early years (mean duration of years was 10.9 for this group, SD = 4.8, range = 4–20; comparing to M = 1.7, SD = 2.1, range = 0–10 years for the rest of the participants). Duration of rehabilitation was also found to correlate significantly with severity of the hearing loss (r = .60, p < .001), low auditory function (r = .47, p < .001), low speech intelligibility (r = .41, p < .01), and usage of sign language in addition to speech (r = .46, p < .001). It is possible that students who had participated
in especially prolonged rehabilitation due to rela-tively deviant auditory and verbal functioning may had been more resistant as a group to nor-malization processes and their potential emo-tional effects. Whereas this explanation needs further research, we analyzed the hypothesized mediation paths separately for the two sub-groups in order to allow for meaningful data. The findings of the post-hoc mediation analyses are presented in Table 4. For the highest level group (n = 24), only one mediation path was significant: a full positive indirect effect of intensity of reha-bilitation on behavioral coping through the medi-ation of environment-directedness. For the rest of the sample (n = 64), all four mediation paths showed significant full negative indirect effects. Both EDS and BFNE significantly mediated between the intensity of rehabilitation during childhood and negative emotional, as well as behavioral, levels of coping with deafness in adulthood.
Discussion
The relations that were found in this study between environment-directedness measures and emotional and behavioral coping with deaf-ness exemplify the importance of viewing the processes of coping with disability within a wider psychodynamic context. Participants who displayed greater environment-directedness had more difficulty in admitting the hearing loss and revealing it in interpersonal communication. Table 3. Mediation coefficients: over-normative attitude of parents as an independent variable.
Environment-directedness measures (mediating variables) Coping with hearing loss (dependent variables) Mediation coefficients
Total Direct Indirect
EDS Behaviors –.432 (p = .006) –.264 (p = .046) –.168 (95% CIa, –.390 to –.011)
Emotional –.501 (p = .014) –.324 (p = .084) –.177 (95% CI, –.427 to –.013)
BFNE Behaviors –.432 (p = .006) –.318 (p = .022) –.113 (95% CI, –.297 to .020) Emotional –.501 (.014) –.325 (p = .059) –.176 (95% CI, –.432 to .036)
EDS: Environment-Directedness Scale; CI: confidence interval; BFNE = Brief Fear of Negative Evaluation Scale. Behaviors: Maladaptive Behaviors Scale; Emotional: Emotional Acceptance Scale (N = 88).
Bold values represent significant results.
Their negative feeling toward the hearing loss had an external effect on their capability for full and authentic participation in social interactions. From a psychodynamic perspective, it is possi-ble that their elevated sensitivity to social expec-tations made it more difficult for them to accept and reveal disability needs which may not be easily understood or approved by other people.
Interestingly, this process of weakening of the self was found to relate to over-normative attitudes of parents, a variable which was par-tially found to have a negative effect on emo-tional and behavioral coping with deafness through the mediation of the environment-directedness measure. Similar mediation paths were also found, in post-hoc explorations, with respect to intensive auditory and speech train-ing durtrain-ing childhood, up to certain duration in years as will be discussed later. Clearly, both parents and professionals perceive normaliza-tion and rehabilitanormaliza-tion as means for improving the child’s ability for independent and confident coping with disability. However, such practices are often based on the medical model of disabil-ity (Oliver, 1990), which locates the “problem” within the child. The child needs, according to this model, to correct parts of him/herself and invest elevated efforts in self-adaptations in
order to look and function as non-disabled as possible. Such efforts may restrict the condi-tions which, according to psychodynamic the-ory, are necessary for developing strong, livable, and authentic sense of self. Among them are opportunities for the child to be in an “unintegrated” relaxation in the presence of the caregiver (Winnicott, 1979 [1965]), a state in which the infant or the child has no active pur-pose or interest nor does he have to respond to external impingements, which enables him to feel spontaneous sensations as an integral part of himself, environment which enables the child to internally and gradually integrate men-tal experiences with psychosomatic ones (Winnicott, 1978 [1949]), and environmental adaptations which enable the child to develop age-appropriate sense of creative omnipotence, necessary for free play and healthy psychologi-cal development (Winnicott, 1965a [1960], 2005b [1971]). Parents who are involved in didactic rehabilitational practices, as well as parents who intensely seek for normalization of the child, are at risk of neglecting these aspects in the child’s development. From a psychody-namic perspective, lack of mirroring and vali-dation of the child’s experiences and needs may leave him/her more dependent on other people’s Table 4. Post-hoc mediation coefficients: intensive rehabilitation as an independent variable.
Duration of rehabilitation in years Environment-directedness measures (mediating variables) Coping with hearing loss (dependent variables) Mediation coefficients
Total Direct Indirect
Short to moderate durationa (N = 64) EDS Behaviors –.071 (p = .006) –.034 (p = .121) –.037 (95% CIb, –.077 to –.007) Emotional –.030 (p = .360) .013 (p = .674) –.043 (95% CI, –.096 to –.008) BFNE Behaviors –.071 (p = .006) –.045 (p = .064) –.026 (95% CI, –.062 to –.006)
Emotional –.030 (p = .360) .011 (p = .702) –.041 (95% CI, –.086 to –.011) Long
durationa
(N = 24)
EDS Behaviors –.008 (p = .945) –.109 (p = .357) .101 (95% CI, .003 to .348) Emotional .280 (p = .117) .212 (p = .279) .068 (95% CI, –.033 to .346) BFNE Behaviors –.008 (p = .945) –.016 (p = .871) .008 (95% CI, –.166 to .157) Emotional .280 (p = .117) .262 (p = .037) .018 (95% CI, –.006 to .166)
EDS: Environment-Directedness Scale; CI: confidence interval; BFNE: Brief Fear of Negative Evaluation Scale. Behaviors: Maladaptive Behaviors Scale; Emotional: Emotional Acceptance Scale.
Bold values represent significant results.
perceptions in order to gain self-approval (Miller, 2000 [1979]). This may be relevant whenever intensive normalization is accompa-nied by a lack of awareness and validation of the child’s difficulties and needs that are related to the disability or even to the rehabilitation process itself.
The research hypothesis according to which intensive rehabilitation will negatively affect coping with deafness through the mediation of environment-directedness was not supported. However, post-hoc analyses suggest that it failed due to a non-monotone relation that existed between intensity of rehabilitation and environ-ment-directedness. Our findings regarding the differentiation between the participants accord-ing to the duration of the rehabilitation program suggest that the positive relation between inten-sity of rehabilitation and environment-directed-ness characterized participants who displayed relatively improved auditory and verbal func-tioning. These participants, who comprised the majority of the sample, showed significant medi-ation paths in the hypothesized directions, that is, intensive rehabilitation negatively affected their emotional and behavioral coping with deafness through the mediation of environment-directed-ness measures. The rehabilitation these partici-pants have undergone may have been intensive during childhood (starting at a young age, fre-quent training, training involving parents at home in addition to professionals) but did not last long beyond the early years. These findings suggest that children who are more likely to ben-efit from auditory–verbal training and whose post-rehabilitation functioning is closer to “nor-mal” standards, thus making the disability less visible or severe, may be more likely to internal-ize the normalization process and its subsequent potential emotional outcomes. Another possible factor that may explain why participants who were involved in prolonged rehabilitation did not present negative mediating relations between rehabilitation and coping with deafness has to do with method of provision of rehabilitation ser-vices in Israel. Many d/hh children receive audi-tory and speech services in a public organization (non-governmental organization (NGO)) for d/
hh children which facilitates other activities such as social meetings with other d/hh children. When a child continues with auditory and speech therapy well into late childhood and adolescence, it may also provide him/her with opportunities to socialize with other d/hh children, which may encourage positive attitude toward deafness and lessen the need to attenuate to hearing norms. A previous study (Fellinger et al., 2008) identified d/hh children with severe hearing loss as a risk group for externalized mental health problems when compared to children with moderate, as well as profound, hearing loss. The higher risk of emotional difficulties in this group was explained by their relatively marginalized position, that is, being neither fully part of the hearing nor of the signing-deaf worlds. This may be relevant to the participants of this study as well, who underwent intensive rehabilitation due to the severity of their hearing loss but were not part of the Deaf community.
Implications
rehabilitation team and program. Most impor-tantly, parents should be involved as key factors in assisting the child in developing self-approval capabilities. As part of this process, children would also benefit from learning how to man-age disability-related experiences and how to incorporate them into their self-concept and interpersonal interactions, including the devel-opment of self-advocacy skills (Olkin, 2007).
A philosophical glance would ask how we can entail rehabilitative practices without the implicit encouragement of the child to internal-ize the medical model of disability, that is, the view of disability as an individual flaw that should be corrected. Is there a way to sieve the practical advantages of rehabilitation from its potential costs for the child’s sense of self, which may generate a form of psycho-emotional disab-lism (Simpson and Thomas, 2015)? This ques-tion can be referred to by the conceptual distinction, made by Bourdieu (1990 [1980]), between practical and pragmatic faith. Practical faith is compared by Bourdieu (1990 [1980]) to the acquisition of mother tongue, in which “the child learns at the same time to speak the lan-guage (which is only ever presented in action, in his own or other people’s speech) and to think in (rather than with) the language” (p. 67). The lan-guage and culture we are born to mold our ways of thought and internal identity by the uncon-scious practice of their usage. We are living them unreflectively—they are our “immanence in the world” (Bourdieu, 1990 [1980]: 66). A prag-matic faith, however, is equated by Bourdieu to a foreign language which is learned consciously. A person adopts the rules of the game for pragmatic reasons, knowing that they are arbitrary, contrary to primary learning. Could rehabilitation of chil-dren, which sometimes starts at a very young age and always through actions, be introduced to them as a pragmatic faith? Some steps may pro-mote such a pragmatic view. Rehabilitation can be treated conceptually as just one arena of the child’s life, of which the child can rest. The child may be introduced to alternative views of disa-bility, deeply shared by his/her family and friends. Examples can range from affirmative or cultural model (e.g. Bogart, 2014; Swain and
French, 2000; Olkin, 2007) which views disabil-ity as a positive part of one’s identdisabil-ity or culture and stresses proud affiliation with the disability community (i.e. Deaf culture), to universalist perception of disability as a normal encompass-ing experience shared by every human beencompass-ing (e.g. Davis, 2006b).
Limitations and suggestions
for future research
parents thus reinforcing over-normative attitude of parents). Future research would benefit from employing longitudinal designs, addressing directly children’s subjective experiences, and estimating the influence of alternative views of disability, as well as interventions for strength-ening the child’s sense of self.
Acknowledgements
The authors wish to express their gratitude to the stu-dents who participated in the study and to thank Daphna Dobrenko, Shlomit Warshavsky, and Tamar Spanier for their thorough and sensitive work in con-ducting the research. They would also like to thank Dr Reuma Gadassi for her helpful suggestions and for the reviewers of this manuscript for their most helpful comments and suggestions.
Declaration of conflicting interests
The author(s) declared no potential conflicts of inter-est with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research was sup-ported by the Harry and Sylvia Hoffman Leadership and Responsibility Program of the Hebrew University, Israel Foundation Trustees, Israel National Insurance Institute, Eric and Fuga Neuberger Foundation, Salinski Foundation, the Sigmund Freud Center for Study and Research in Psychoanalysis at the Hebrew University, and Israel Association of University Women.
Notes
1. The term rehabilitation is used in this study to refer to auditory and speech training conducted from a young age with professionals, and some-times with parents at home, in order to advance the child’s usage of spoken communication. 2. The upper case D is used by Deaf people to
denote a cultural identity and a sense of belong-ing to the Deaf community, with its own unique language, art, history, and inner codes. This is contrasted to the lower case d, which denotes the traditional medical definition and concep-tion of deafness.
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